DOWN SYNDROME IN INDONESIA

 The unmet needs of heaven’s flowers     

                          

Today (21 March) is World Down Syndrome Day, recognizing ‘the value, acceptance and inclusion’ of people with the genetic disorder.  But as Duncan Graham found, there’s little to cheer about in Indonesia other than the resilience of brave families.

Let’s celebrate heroes without uniforms, people like Aning Nurul, 39, and her husband Romadhan, 41. Eleven years ago the East Java couple’s comfortable world was suddenly grabbed, roughly shaken and tossed back, never to be the same again.

Ihsan Faiz, their darling second son, had been diagnosed as one in a thousand - a Down Syndrome child.

“When he was born all seemed OK,” said Aning. “There were no signs of anything unusual.  Our first son Ardiansyah had been born two years earlier and he was quite normal.

“Slowly we noticed Ihsan wasn’t developing as fast as his brother.  We saw four doctors who weren’t interested.  The fifth understood.”

Down Syndrome, named after a 19th century British doctor who first identified the incurable condition, develops when the body has an extra chromosome.  The causes are complex and still little understood. Only one per cent are linked to the child’s hereditary.

Precise figures are elusive, but using World Health Organization statistics an estimated 4,500 DS children are born every year in Indonesia, the majority boys. Although official figures aren’t kept, a parents’ support group believes around 300,000 Indonesians have DS.

Typically DS kids have stunted growth, flattened facial features and speech problems. Given proper health care they can often live into their 50s, though in the past many died young. In the West a few DS people have graduated from university and achieved in the arts.

They are prone to other health problems, particularly heart disease, and usually have low intelligence, though Ihsan is in the less severe group.  He can speak a little, play computer games and use the toilet.  He radiates joy.

After hearing the news the family unblinkingly confronted their new reality.  Lesser folk and those genuinely unable to cope because Indonesia is not a welfare state, would have dumped the boy in a home for the disabled. Aning and Romadhan chose to give love, unqualified and abundant.

“This is part of God’s plan, and whatever He gives us is the best,” said Romadhan. “Who are we to understand why? There is a reason.”

Many couples split under the pressure of caring for a handicapped child. Blaming is hard to resist.  Others move closer. “We no longer quarrel over silly things,” laughed Aning.  “We’ve grown to be more patient with each other.”

Though not with the way they’ve been treated, by the medical profession, teachers and the community of Sidoarjo, near Surabaya, where they once lived.

To have a disabled child was proof of parental sin to cruel neighbors, whose mutterings, stares and snubs scratched the couple’s pain, particularly as Romadhan was often away in Jakarta working as an airline aviation inspector.

“We tried to ignore the gossip but it was everywhere,” he said. “We were judged through ignorance. The situation became worse when we tried to enrol Ihsan at school.   No-one would accept him.

“The education and welfare of children is part of our Constitution.  But the law is not being upheld and no one seems to care.  We want Ihsan to grow into an independent man, to reach his full potential.

“We’re an educated professional couple and I have a good job.  We know how to get things done and where to protest, yet we still get little more than embarrassed nods.  So imagine how difficult it must be for poor villagers.”

Four years ago the family moved to Lawang, Aning’s home town.  Here the smaller community was more accepting. The couple got to know others with handicapped kids, to share experiences and provide mutual support.

As a bonus a local school was happy to take on the responsibility. (See sidebar)

Pre-natal screening can diagnose genetic defects and offer the mother termination, a choice frequently taken in the West. “I would never have had an abortion,” said Aning. “Whatever God has given me is the best.”

Ihsan is close to his father and occasionally accompanies him on aircraft inspections to crew members’ amazement and the boy’s delight.

“So many families try to shut away their handicapped kids for shame,” Romadhan said.  “Don’t hide your children. They are the stars of every family, the flowers of heaven.

Father and son rubbed noses and cuddled, the tough engineer whose signature can ground an Airbus, and the chuckling, vulnerable boy who gently strokes the family cat.

“This is Ihsan,” said Romadhan facing his visitors with pride. “This is my special son.”

Caring schools

Ar-Roihan is a private Islamic school in Lawang with 365 students, 19 of them disabled. The principal, Lailil Qomariyah (in photo, left), follows the reasoning of a 2010 Australian report advocating inclusive education in Indonesia for children with special needs.

“Why not? she asked. “All handicapped kids are God’s children and have a right to education. I want to run a caring school, whatever the condition of the students.”

Lailil has trained Khukmi, one of her teacher aides, to specialise in caring for DS students. The school has submitted a proposal to the education department for resources, training programs and a proper curriculum, hoping for a response mid-year.

Lailil said officials’ responses have concentrated on the difficulties rather than the benefits

“An inclusive school doesn’t just help those with special needs,”  she said. “They mix with the other children who accept them as they are.”

In Malang YPAC, a private rehabilitation center and school, cares for 70 handicapped students, including eight with DS. Some live in permanently.  Principal Endang Haryani, a former engineer who volunteers her services, said most of the children came from poor families and had been rejected by mainstream schools.

“We just ask them to pay what they can,” she said. “The law says they should be accepted by schools, but the law’s not being applied.”

YPAC is not associated with any religious group.  It costs Rp 1.5 billion (US$ 140,000) a year to run.  The shortfall comes from donors, mainly individuals.  Endang said she’d rejected funds from a tobacco company.

“We can’t do that,” she said.  “We’re promoting good health.”

(Breakout two)

I am, I can

Persatuan Orang Tua Anak Dengan Down Syndrome (POTADS), the Association of Parents with DS children, started late last century to empower parents to cope, share information and ensure their kids have the same rights as others.

POTADS has around 1000 members. It’s based in Tangerang and has five regional branches. Its motto is: I am, I can.

Director Noni Fadhilah, who has an independent adult daughter with DS working in an office, said public ignorance made parenting unnecessarily harder, and judging caused great stress. 

“A future program will help religious leaders understand DS is not a curse so they can  inform their congregations,” she said.  “This is an issue we’ll confront when a new law is passed requiring companies to employ disabled people.

“At the moment we’re focussing on getting parents to therapists  and helping DS children become self-sufficient so they are not helpless when the parents eventually die.”

(Breakout three)

Easy to love

Children with DS tend to be more gentle and caring than those without the condition, according to clinical psychologist Diantini Ida Viatrie.

“In my studies over seven years I’ve noticed that they naturally help others without wondering whether that’s right,” she said. “I’ve never seen any angry.  They are easy to love and please. They have special abilities.”

Diantini, who lectures at two universities in Malang, also assesses the IQ of children with DS and advises teachers and parents on issues like sibling rivalry when normal children feel neglected.

“Families need to make changes so their children don’t hurt themselves and they need to be patient. The children have the right to live a normal life.”

“Relatives and friends should not shower pity on a family with a DS child. Such emotions are unhelpful”.

She acknowledged that in the future there’s likely to be proportionately more DS kids in Indonesia than Western countries where pre-natal testing and abortion are options.

“I have a positive view of my society,” she said. “Indonesians will help and support their neighbors with a handicapped child – that’s our culture. However, sadly, there’s still much ignorance about DS.”

##

(First published in The Jakarta Post 21 March 2014)